Tag Archives | Asperger’s Syndrome

Joe Scarborough Continues to Misinform the Public about Autism

Joe ScarboroughSo Joe Scarborough is at it again.

This marks his second appearance in the blog for passing off his opinions about autism as fact on MSNBC (and, researching this story today, I found out that he’s done it a third time that I missed), and I’m writing about it to add my voice to those that are asking that he please not do it again.

We’ve already got PETA warning people this week about a totally unsubstantiated claim that there’s a link between autism and consumption of dairy products. We don’t need Joe Scarborough expounding on what appears to be a favourite talking point about a supposed link between autism and violent behaviour.

Quite enough of that has been going on since last Friday.

Mass Killings and the Media’s Love Affair with the Autism-Violence “Link”

It’s been just over a week since Elliot Rodger opened fire in Isla Vista, killing 7 people and wounding 13 others. And, of course, the media has been making much of the fact that he was autistic, although some sources are now disputing that he was actually diagnosed; see here and here.

Here are 4 articles from major news sources I found just by doing a quick search, that commented on the fact that Rodger was autistic, implying a link (more strongly in some cases than others) to his violent behaviour:

California killer’s father struggled with money, court documents show

Mental illness in spotlight after UC Santa Barbara rampage

Virgin killer’s parents read his hate-filled manifesto then called police then rushed to stop him when they heard of murder spree on their car radio

Elliot Rodger is Isla Vista drive-by killer

And, of course, Joe Scarborough felt compelled to comment, as he did regarding the gunmen in the Aurora, Colorado movie theatre shooting in 2012 (he stayed blessedly quiet after the Newtown shootings), that Rodger had Asperger’s Syndrome (which now falls under the umbrella of Autism Spectrum Disorders). It makes perfect sense to him to talk about this, as he knows there’s clearly a link between an autism diagnosis and the tendency to commit this sort of violence. He’s done this twice about Elliot Rodger.

Except that the consensus is now that there’s not a link. I’d expect Joe Scarborough to know this, as a media person.

I’d expect that Joe Scarborough would have done his research on this, and that he’d know that scientists no longer put much stock on the studies that originally suggested those findings (see this article for a brief summary of the research). Perhaps he thought that there’s a bandwagon on which to jump at the moment, given that the Washington Post wrote an article recently about a new study suggesting a link, but it’s looking like even that study was flawed.

The research just doesn’t support the idea. But Joe Scarborough wants to keep talking like it does. And it’s important that he stop.

Why is it Important, Joe Scarborough?

I’m not writing about this because I had particularly strong feelings either way about Joe Scarborough or MSNBC before this latest “commentary”. Granted, I wasn’t a huge fan of either. But my cable package doesn’t let me get MSNBC so it’s kind of a moot point. I rarely watch 24-hours news channels these days anyway.

I have strong feelings now. I definitely wouldn’t watch MSNBC, even given the opportunity, as long as they think it’s okay to let this sort of ablism continue to happen on the network.

This is important, Joe Scarborough, because after a highly emotionally charged event like the UCSB shootings, people are upset and hearing selectively. From what I saw and read, the media was a bit better than after Newtown especially about explicitly stating that even though the shooter was autistic, experts didn’t believe that it was a factor in his behaviour, instead of just jumping on the “autism = violence” bandwagon with no qualifying statements. I will give them that. However, people were (are) understandably in shock, and sad…angry, scared, and looking for the “why” behind the event, and in that state, hearing “Elliot Rodger had high-functioning autism” (yes, I’ve seen it put that way, even though using the functioning level label is quickly falling from favour within the disability community…there are sensitivity issues in the coverage for which the media does not get a free pass) is going to stick with them.

Especially when a media figure like Joe Scarborough goes beyond speculation and starts deliberately giving out information based on pseudo-science and/or outdated research. It’s bad enough that 24-hour news networks speculate about the details of a story because they don’t know enough facts yet and they still need to fill time (and regular CNN viewers know that it’s come back to bite that channel in the ass before). It’s quite another to start giving out the wrong information about a group that’s already fighting misinformation campaigns and discrimination when the right information is easily accessible.

It’s unethical and irresponsible on Joe Scarborough’s part, and it’s just another sign of how devalued autistic people truly are in society that MSNBC hasn’t reprimanded him for it, or reprimanded him more publicly, if they did. He did release an “apology” in an off-air statement after pushback after his remarks after the Colorado shootings, but there was nothing on-air.  If he’d started going on, on-air, about an unsubstantiated claim that belonging to a certain race made someone more likely to commit mass violence, I would think (hope) that the network would shut it down promptly and emphatically and require, at the very least, an on-air apology. Certainly two repeat offenses would likely result in the person being fired.

Why is this different? Why has Joe Scarborough gotten away with doing this three times?

Imagine How It Must Feel, Joe Scarborough

I know that the autism witch hunt after these events has gotten to the point where one of the first things I ask myself after hearing about a mass shooting like the one at UCSB is, “I wonder how long it will be before someone asks whether the shooter is/was autistic.”

I’m not autistic, so I can’t understand what it must feel like to know, for autistic people,  that it’s never very long.

I try to think how I’d feel if the question was about an unsubstantiated link between stroke and violent behaviour that the media kept insisting on bringing up, and as someone who would be then be affected by the question, these feelings come to mind:

Dread.

Fear.

Anger.

Helplessness.

Sadness.

It’s a heck of a lot to shoulder. It’d be quite a thing to explain to an autistic child (to any child): “You’re okay…they’re only saying that because they thought at one point that autistic people were more violent than other people. They were wrong about it, but they…can’t let it go.”

Let it Go, Joe Scarborough

Joe Scarborough, no one likes being lied about, especially when those lies are damaging.  If you feel the need to speak about autism in connection to mass shootings, speak about it accurately.

For the sake of your autistic son, if no one else.

With all due respect, I don’t want to have to write about you (at least not in this context) again.

For those interested…

Joe Scarborough’s commentary after the 2012 movie theatre shootings in Aurora, Colorado

Commentary on the “non-apology” and a great interview on the autism-violence “link” with Autism Self-Advocacy Network President Ari Ne’eman and journalist Mike Elk (also after the Aurora shootings)

Joe Scarborough’s first comments after the UCSB shootings – “…he was on the Asperger’s scale – big surprise.”

Joe Scarborough’s most recent comments. The general comments about talking about mental health are spot on – but he brings it back to Asperger’s Syndrome, which he doesn’t feel he can name on the air because of criticism that he’s (rightfully) received in the past after doing so.

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Update: Joe Scarborough Clarifies Comments Regarding James Holmes and Autism

Joe Scarborough’s reaction to criticism from autism advocates about Joe Scarboroughhis statement on James Holmes’ shoot-out in Aurora, Colorado last week may been prompted by an autism diagnosis was quick. The commentary was made on Monday’s edition of MSNBC’s “Morning Joe”, and Scarborough issued a clarification the next day.

http://www.examiner.com/article/joe-scarborough-issues-statement-clarifying-comments-on-autism-aurora-shooting

I don’t know.

You Never Get A Second Chance to Make a First Impression, Joe Scarborough

I don’t get MSNBC. I’ve never watched “Morning Joe”, and until yesterday I wouldn’t have known Joe Scarborough if I’d fallen over him.

So what are my impressions now?

I remember thinking when I first viewed the video of Joe Scarborough’s now-infamous “autism commentary” that he was rambling toward the end. It felt to me like he’d lost his focus. I heard him talking about the challenges of raising a child with Asperger’s Syndrome and thought, “He’s close to burning out. It’s hard for him to talk about this.” It felt to me, after listening to the video several times, that there was a point where he stopped talking about James Holmes and Aurora and started talking about the stress of supporting a family member who just doesn’t fit into society very well.

But take a look at these sentences: “Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale. I don’t know if that’s the case here, but it happens more often than not.” I don’t know how to read this any other way than:

  1. Scarborough believes that the type of socially-disconnected individuals that conduct mass-shootings are more often than not somewhere on the autism scale (there’s no evidence to suggest this.)
  2. Scarborough’s point in bringing all this up is that he believes that James Holmes could possibly be on the autism spectrum.
I suppose that it could be a matter of unfortunate juxtaposition of comments about two separate things: Joe Scarborough’s list of the characteristics that he believes mass-shooters  possess, and autism as an example of a mental health disability that causes isolation and requires a strong support system. But if that’s the case, it’s a very unfortunate juxtaposition, to the point of being unprofessional for a news commentator; Joe Scarborough owes people with autism not just a clarification, but an apology for linking James Holmes and autism in such a way that people who don’t know better walk away after hearing his words saying, “I didn’t know that autistic people could get violent like that…I’d better be careful.”
I’m also not impressed with a bit of “victim-blaming” that I see going on in his clarification. I went through the responses to Joe Scarborough’s remarks that I could find from the major autism advocacy groups, from some well-known journalists and disability bloggers, and what I could find in the media online. I never heard anyone say that he linked “all violent behaviour” to Asperger’s. I believe that’s a significant overstatement, and to say directly afterwards that those who did make that suggestion “missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers” is just obnoxious. Here’s a tip on trying to make peace with people that you’ve insulted, Joe: Don’t insult them further by suggesting that the whole affair was their fault.

Bottom Line for Joe Scarborough

You’ve clarified. Now apologize. You’ve got nothing to lose and it really is the right thing to do.

 

 

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Checking Myself: Ricky Gervais as Derek Noakes

When I saw that disability activist Nicky Clark had interviewed Ricky Gervais about yet another derek noakesdisability-related issue, I just…died a little inside. After the “Mong-gate” incident last year, where Gervais caused controversy by referring to his Twitter followers as “mongs” and pulling faces in his Twitter pics that made him look like a man with Down’s Syndrome, you’d think that he’d just steer clear of everything disability-related. However, his latest television project. featuring Ricky Gervais as Derek Noakes, has got the lines buzzing again.

The Goods on Derek Noakes

“The Independent” describes Derek Noakes (whose first name is also the title of the show) as “a kindly but simple helper at a nursing home, who appears to have learning difficulties.” Comedian Stewart Lee has described Derek Noakes as having “some superficial similarities to Down’s syndrome.” It’s difficult to tell the extent to which Gervais plays Derek Noakes as a person with disabilities from the clips currently available on the Internet (the show doesn’t debut on Britain’s Channel 4 until Thursday). Gervais insists that he’s never seen Derek Noakes as a person with disabilities, or he would have hired someone with disabilities to play him.

In the Words of Some “South Park” Character: “I Call Shenangigans!”

(Or, “I think that’s bullshit”, to those not familiar with South Park.) At least…I did at first. In light of Mong-gate, and the fact that Gervais’ last show was about someone with dwarfism (drawing a lot of publicity, both positive and negative, for its treatment of people with dwarfism), he’s just been getting too much attention for his views on disability and his feelings about offending people with his comedy about people with disabilities (all his comedy in general, really.) Since Gervais seems to be of the “even negative press is good press” school of public relations, of course it doesn’t matter that he’s received as much criticism as he has support. It’s all attention, and it’s all on him.

I was disgusted with this latest incarnation of it, quite frankly. As is my right, Mr. Gervais, by the way. You have the right to free speech. I have the right to be offended by what you have to say, no matter how much you insist that it’s wrong that I am.

However.

Ricky’s comment to Nicky Clark about how if he said that Derek Noakes wasn’t disabled, he wasn’t, and then a subsequent comment about Sheldon from “The Big Bang Theory” got me thinking.

I’ve talked before about how my friends in social services and I are convinced that the Sheldon Cooper character in CBS’ hit sitcom “The Big Bang Theory” has Asperger’s syndrome, although it’s never been acknowledged by anyone involved with the show. If someone involved with the show was to say, “Sheldon doesn’t have Aspeger’s. He’s just…quirky,” I suppose I’d feel that I have no choice but to accept that. I’ve never felt that his character has been particularly insulting to people with Asperger’s because you could interpret him as having it. I actually quite enjoy the show, and the Sheldon character. It’s funny that I’m willing to give the producers of “The Big Bang Theory” more latitude than I am Ricky Gervais with Derek Noakes and his new show. I may have to examine how much of this is really about Derek Noakes and how much of it is residual annoyance about “Mong-gate”, which really did make me angry.

More about “Mong-gate”: http://www.girlwiththecane.com/ricky-gervais/ Nicky Clark’s interview with Gervais: http://nickyclark.blogspot.ca/2012/04/ricky-gervais-talks-about-derek-karl.html

“The Independent” article:  http://www.independent.co.uk/arts-entertainment/comedy/features/mock-the-disabled-me-ricky-gervais-on-how-he-has-been-misunderstood-7621909.html

Stewart Lee’s commentary:  http://www.guardian.co.uk/commentisfree/2011/nov/13/stewart-lee-comedy-offensive-gervais

More on “The Big Bang Theory”:  http://the-big-bang-theory.com/

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Britain’s “The Undateables” Explores Disability and Dating

The Undateables  - I didn’t know how to react. I’ve always found British television to be very edgy

The Undateablesand imbued with a humour that American and Canadian television just can’t seem to replicate (for example, the British version of The Office, which predated the American version and is howlingly funny – and I’m a fan of the American version as well). Is naming a reality television show about people with disabilities trying to find love another example of this edginess? Or is it just a poor, poor choice of title for a show that’s a step backward for people with disabilities?

Who are The Undateables?

I couldn’t access clips from the episode that has aired already, but I read the descriptions of the three episodes that air this season. The first episode follows three people on at least one date:

  • Richard is an amateur radio enthusiast with Asperger’s syndrome. He will only date women who live within a five-mile radius of his home, and won’t eat on a date.
  • Luke, a stand-up comedian with Tourette’s syndrome, is scared to date for fear that his disorder might cause him to call his date an insulting name.
  • Penny has brittle bone disease. A trainee teacher who has never dated, she is 3’4″ tall. Her  ideal man is 6’0″.

Future episodes of The Undateables include an amateur poet with learning disabilities, a skateboarder with facial disfigurements, and a student with Down’s Syndrome.

Reactions to The Undateables

Many people, both with and without disabilities, found the billboard campaign that Channel 4 used to advertise The Undateables very insulting. The title of the show, and the implication that people with disabilities are “undateable” seemed a huge issue among the people that left comments on Channel 4′s website about the show’s first episode. However, most people seemed willing to at least watch it, and that’s where the viewership became more divided. While the majority of commenters seemed to feel that The Undateables could be very useful in breaking down stereotypes about people with disabilities and dating, others argued that the show was humiliating for and exploitative of those involved , more focused on getting ratings through controversy than educating people about disabilities, and naive in its presentation of the issues that people with disabilities face on a daily basis.

Even the press seems divided. Samir Raheem of “The Guardian” used the word “ridicule” when talking about how The Undateables treated its participants in the first episode. From the way he described the episode, it sounds like I’d agree. The show apparently referred to the participants as “extraordinary singletons” and the dates with whom they were paired as “extraordinary people”; “In the world of matchmaking, people with disabilities can be a hard sell,” Raheem reports the voice-over saying; finally, the show seemed to make it a point to pair the participants with other daters with disabilities (as if we can only date “within group”), or with people that would set the participant up for failure, such as the dater that found Luke’s Tourette’s funny and was disappointed when he didn’t call her a name. For Luke, who believed that the Tourette’s wasn’t necessarily the problem, but more his extreme shyness around women, that’s only going to cause a scenario that practically ensures that Tourette’s would become an issue.  Read Raheem’s entire review here of the first episode of The Undateables here:

http://www.telegraph.co.uk/culture/tvandradio/9183670/The-Undateables-Channel-4-review.html

Lucy Mangan of “The Guardian”, however, felt that The Undateables was “kindly, thoughtful, and full of inadvertent comedy”, and not at all exploitative. She felt that leaving in bits like Richard putting on far too much aftershave and then  explaining that “when you’re going out on a date, you’ve got to be sure,” was less patronizing than leaving them out. I disagree. It’s one thing to have a camera follow you around on a date. It’s quite another to have people point out grooming faux pas that, because of your disability, you might not realize you might be making, and include it in a matchmaking program. It *is* patronizing, and the role of people with disabilities in our society is not to make us smile nostalgically and say, “Wow, I did that once…poor bastard.”

Which leads me up to things being inadvertently funny. I know from working with people with intellectual disabilities that they sometimes do things and have conversations where they don’t mean to be funny, but are. It does happen. But the key there is, “they don’t mean to be funny”. So you don’t laugh. Because no one likes to be laughed at because they misunderstood how to say or do something.  It’s not “kindly” or “thoughtful”.

Read Lucy Mangan’s review of the first episode of The Undateables here: http://www.guardian.co.uk/tv-and-radio/2012/apr/03/the-undateables-horizon-tv-review?newsfeed=true

The Undateables airs twice more in the UK. I’m hoping that it doesn’t have a second season, let alone an American version.

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Update on the Revised Diagnostic Criteria for Autism

The committee working on the revised diagnostic criteria for autism is standing by the changes revised autism diagnostic criteriathey want made in the DSM-V, despite public criticism.

Concerns that the revised diagnostic criteria for autism will cause people to lose their diagnosis, and therefore supports, spurred the creation of an online petition that thousands signed.

Autism Rates Higher Than Ever

On the heels of CDC data that says that 1 in 88 kids has autism, one can understand why parents and disability advocates are concerned about the revised diagnostic criteria for autism. The DSM-V committee proposes that all diagnoses along the autistic spectrum, including Asperger’s syndrome, be referred to as simply “autism spectrum disorder”. A study by Yale university indicated that this could mean that people currently diagnosed with Asperger’s or pervasive developmental disorder could lose their diagnosis, and therefore their supports. The American Psychiatric Association says that the Yale study is flawed, and that people don’t need to worry.

Asking Tough Questions About Revised Diagnostic Criteria for Autism

Even if Yale’s analysis is correct, I don’t know that using the revised diagnostic criteria for autism will mean that people who already have a diagnosis will lose it. However, I do wonder if the revised diagnostic criteria for autism will mean that people who would have been diagnosed before May 2013, when the DSM-V is released, may not be diagnosed after May 2013. Not only would that be a very big deal for people and families that really do need support, it may change the 1 in 88 number that we are seeing today. It’s an important number. Not because everyone who has it has an incredible uncomfortable life (see http://www.girlwiththecane.com/category/running_stories/dsm-v-changes-to-autism-criteria/), but because some people with autism live with a very limited ability to interact with the world and with those who love them…and wouldn’t it be nice if research provided them with ways to do that?

Shame on Research Funders

I remember reading a quote somewhere once, when autism rates were much lower and only the forms that made people very trapped in their own minds were generally recognized, that if one in whatever the prevalence was at that point children were being kidnapped, it would be a national emergency (implying that these children with severe autism were, in a way, being kidnapped and held from loving participation with their families by the severity of their diagnosis.) We know now that autism is not that severe for all people. However, it’s just amazing to me that the only way the autism rates may possibly drop is to fiddle with the autism diagnostic criteria in a way that may change the number of diagnoses.

But…hopefully my fears will be unfounded and all people with autism will continue to get whatever support they need.

What do you think will happen?

More about this story:  http://www.disabilityscoop.com/2012/03/28/dsm-standing-firm-autism/15266/

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Hollywood News: Actors with Disabilities Not Playing Characters with Disabilities

actors with disabilitiesLennard Davis, a professor at University of Illinois at Chicago, wrote an interesting blog post recently about how wrong he feels it is that characters with disabilities on television and in movies aren’t being played by actors with disabilities.

http://www.huffingtonpost.com/lennard-davis/dont-apply-dont-accept-a-_b_1324731.html

Actors with Disabilities in TV and Movies

For what it’s worth, I’ve wanted to blog on the same thing for a long time. But I don’t watch enough current television to know which shows feature characters with disabilities and if they’re played by actors with disabilities. I’m aware that there’s a student on “Glee” in a wheelchair (played by an actor without disabilities), and a boy on “Parenthood” that has Asperger’s Syndrome (and I’m unsure whether the actor who plays him actually has Asperger’s). I can think of some characters from cancelled shows that had disabilities, but the only one I could say for sure was actually played by an actor with a disability was Corky on “Life Goes On” (played by a young man with Down’s Syndrome).

Movies are easier. I can think of lots of movies in which actors without disabilities play characters with disabilities: Leonardo DiCaprio in “What’s Eating Gilbert Grape?”, Juliet Lewis in “The Other Sister”, Sean Penn in “I Am Sam”, Gary Sinise in “Forrest Gump”…and that’s just off the top of my head.

Davis did his research thoroughly, though:

“The facts are that there are about 600 repeating characters in prime-time television, but only six characters are disabled; only one disabled actor plays any of those roles — even though disabled people make up almost 20 percent of the population. In most films, there will be no disabled actors, and when there is a disabled character, it almost always will be played by a non-disabled actor.”

Davis compares it to white men doing blackface, in the process taking away roles from actors with disabilities that really want a career in acting. And for those who think that’s going a little too far, consider how true that really is.

Very Few Roles for Actors with Disabilities

I’ve always loved the theatre. I was very involved with my high school’s drama club, I went to musical theatre camp every summer, and I got involved with my community’s little theatre group when they did musicals. I took dance lessons, and some singing lessons. My sister was the same way. Our parents took us to as much theatre as they could afford, because we obviously loved it.

In university, everyone was much better at theatre arts than I was, and I couldn’t get a part in anything. But I still went to see everything that the drama department put on. I took drama courses.

Not long after becoming mobile enough to get around reasonably with my cane in my home community, I went to see a high school production of “Grease”. After it ended, I stayed behind for a bit and walked around on the stage. It suddenly hit me that the only play I’d read that had a character with physical disabilities was “The Glass Menagerie”, and that I probably wouldn’t be performing again.

I started to cry.

Davis’ point is that there aren’t many roles for actors with disabilities, and we don’t need competition with actors who don’t have disabilities for the small number of roles that do exist. I agree. However…

Wouldn’t It Be Wonderful…

…if, as a person with a disability, I could walk with my cane into an audition, do it, and have someone say, “You’re perfect for this part, so now the character uses a cane?”

Uses a wheelchair?

Is hearing-impaired?

Has a guide dog?

Or, conversely, someone with no disabilities auditions for a part where the character has disabilities, but the director likes him or her so much that she decides not give the person disabilities?

It potentially changes the story, yes…but theatre people do that all the time. They switch a character’s gender, or the time period, or the location, to see how it changes the story, and it brings out sides of the play that helps everyone to appreciate it even more. Who’s to say it wouldn’t work for television or movies?

See the person first, not the disability. Very simple.

All That Being Said…

I appreciate Lennard Davis’ “clarion call” to cast actors with disabilities in roles where the character has a disability. Until we get can get to that place where “people first” is truly a fundamental value, it’s a way of showing actors with disabilities that we value their contributions and of getting them more employment in the entertainment community.

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March is Developmental Disabilities Awareness Month

The title says it all. March is Developmental Disabilities Awareness Month. What

developmental disability awareness month

Autism is a developmental disability

should that mean for us?

What is a Developmental Disability?

The definition of developmental disability changes slightly from state to state (and province to province, in Canada), but the definition used by the Developmental Disabilities Act of the United States is as follows:

“The term ‘developmental disability’ means a severe, chronic disability of an individual 5 years of age or older that:

1. Is attributable to a mental or physical impairment or combination of mental and physical impairments;
2. Is manifested before the individual attains age 22;
3. Is likely to continue indefinitely;
5. Results in substantial functional limitations in three or more of the following areas of major life activity;
(i) Self-care;
(ii) Receptive and expressive language;
(iii) Learning;
(iv) Mobility;
(v) Self-direction;
(vi) Capacity for independent living; and
(vii) Economic self-sufficiency.

5. Reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, supports, or other assistance that is of lifelong or extended duration and is individually planned and coordinated, except that such term, when applied to infants and young children means individuals from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.”

(From http://www.md-council.org/resources/dd_definition.html)

Here are some examples of developmental disabilities:

  • Cerebral palsy
  • Epilepsy
  • Autism
  • Hearing loss
  • Down syndrome
  • Spinal injury
  • Brain injury

Developmental Disability Fun Fact, in Honour of Developmental Disabilities Awareness Month

Having a developmental disability doesn’t necessarily mean that a person has an intellectual disability.

I’m surprised by how many people who work in my field don’t know this. Many of the people with conditions on the list above are very intelligent. There’s even a debate within some agencies that support people with autism whether they should be supporting individuals who have it without supporting documentation that these individuals have intellectual disabilities as well.

What Will Developmental Disabilities Awareness Month Mean for You?

I think that, for me, Developmental Disabilities Awareness Month will me doing pretty much what I try to do already, with a focus on developmental disabilities – raising awareness of what they are, celebrating the achievements of people who have them, and continuing to bust stereotypes where I can of people with developmental disabilities. Because it would be really nice if society got to the point where we didn’t need a month for people with developmental disabilities, because they’re just…people. Don’t you agree?

 

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“Inside His Mind” – A Must-Read about Dual Diagnosis

I came across an incredible blog post over the weekend about a young man with a dual diagnosis.

http://www.li-kids.com/2012/02/01/inside-his-mind-an-interview-with-r/

I’ve never read this blog before, but the post in question is a mother’s interview with her teenagedual diagnosis son   (I’m assuming that ‘he’s a teenager; his age is never given, but one of the tags is “teenager” and the Twitter tweet that led me to the article said he’s a teenager) who has Asperger’s syndrome, bi-polar disorder and obsessive-compulsive disorder. This is called a dual diagnosis – developmental disability and mental health diagnosis. It’s a fascinating read, and a couple of things about it really struck me.

1) R’s Level of Insight into His Dual Diagnosis and His Disabilities

When I worked with teens with intellectual disabilities who could understand that they had a disability, we had a lot of conversations about what “disability” was. Some of them didn’t realize that they had one. Some knew that they had one, but simply didn’t consider themselves people with a disability. Some didn’t want to be considered one of “those people” out of fear of being teased, or of being associated with groups of people with whom they felt they had nothing in common.

I tried to get the message across that if you understand what your disability is and how it affects you, you know how to ask for what you need – from doctors, from formal supports, from informal supports, even from potential employers. I struggled with depression and obsessive compulsive disorder in high school and through my twenties, and I know that I could not have explained nearly as clearly as R how these things affected me.

R’s family needs to look at this ability to reflect on his dual diagnosis and to explain what it’s like to be “in his mind” as a strength that he can utilize.

2) Which Disability R Perceives As Giving Him The Most Difficulty

Some of the difficulties that R experiences likely come from his Asperger’s diagnosis. The trouble picking up on social cues and the social awkwardness are symptoms of Asperger’s (they can be symptoms of other things, too, but if he’s been diagnosed with Asperger’s, those things likely are likely part of that disorder for him.) The fixation on video games and technology may also be a part of his Asperger’s, even though he seems to identify it as something separate.

Based on this interview, it seems to be the bipolar part of R’s dual diagnosis that causes him the most distress. It makes me think about the controversy over the proposed changes to the diagnostic criteria for autism for the DSM-V, and wonder:

  • How many of the R’s medications are treating Asperger’s-realated issues?
  • Are the new psychiatrist and psychologist he’ll be seeing supporting him for the bipolar? The Asperger’s? Both?
  •  What are his doctors’ take on the video games as an addiction (as opposed to another manifestation of Asperger’s)?

3) A Downside to Canadian Medicare

I’ve never said that there weren’t any.

In emergency situations, Canadian Medicare has always served me well, as I’ve blogged on before. But when I read that R will be seeing a psychiatrist…I thought, “Wow, just like that?”

In Ontario, it’s very difficult to see a psychiatrist or a psychologist anymore if it’s not an emergency situation.  It wasn’t always like that. But it is now. It’s very frustrating when you’re supporting individuals who need a psychiatrist and it’s so difficult to get them access to one.

I realize that for people without insurance in the United States, this sort of treatment is very expensive. But with non-emergency psychiatric care so hard to come by in Ontario…it does make me wish sometimes that it was as easy as being able to find a psychiatrist and pay for services, just like that.

I guess there are no easy answers when it comes to health care.

Thank You, Ashtyn Evans and R

Ashtyn printed all of R’s responses about his dual diagnosis unedited in her blog post, and plans to blog about her feelings later.

I’m looking forward to reading her thoughts about R’s dual diagnosis.

 

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Proposed Changes to Diagnostic Criteria for Autism and “The Big Bang Theory”

So…I Was Reading About the Proposed Changes to the Diagnostic Criteria for Autism in the DSM-V

I thought that I would be steadfastly opposed to the changes. But I was surprised to find myself, diagnostic criteria for autismafter reading some articles and some parent blogs, unsure about where I stand on them.

It’s not that I don’t believe that the conditions that are most likely to be affected by the the diagnostic criteria for autism (Asperger’s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified) don’t exist. It’s not that I don’t share concerns that the proposed DSM-V diagnostic criteria for autism might narrow the definition of autism so that people who would have been diagnosed with Asperger’s or P.D.D.N.O.S. might not be any longer, and therefore be denied needed supports and services.

I just wonder if we’ve built Asperger’s especially up in our minds (at least in some cases) as something that requires more supports and services than it actually does. If so, the changes to the diagnostic criteria for autism might actually move us back to a more balanced view of autism and of people.

I think what really brought this out for me was a quote from a mother of a woman with Asperger’s saying that she was afraid that her daughter wouldn’t get into supportive housing if she lost her diagnosis under the new diagnostic criteria criteria for autism, and another quote from Lori Shery, President of the Asperger’s Education Network:

“If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

“God forbid they experience failure,” I thought.

Lessons from “Sheldon”

Sheldon Cooper, one of the main characters on the CBS hit “The Big Bang Theory”, is seen in different ways by different people. One group (which includes my father) sees the character’s tendency to take everything literally, his apparent lack of empathy and inability to understand social cues and rituals until they’re explained to him, his focus on his own set of rituals, and his difficulty with dealing with changes in his routine, as delightfully “quirky.”

My friends in social services and I see him as a wonderful study in Asperger’s syndrome, although it’s never been mentioned in the show.  It doesn’t matter. Sheldon has his own group of (non-disabled) peers, including a roommate, a girlfriend, and friends at work. His “quirks” sometimes drive them crazy, but they’ve developed ways of dealing with them.

Sheldon doesn’t always thrive in the “real world”, by any means.  His difficulties relating to people and understanding social conventions cause him setbacks, and he doesn’t always understand what has happened and why. But he functions in his job and his relationships, without a diagnosis and without any formal supports.

I’m really uncomfortable with the idea that social services’ role is to protect people from failure, or surround them with so much support that they can’t be “quirky” anymore.  Because people with disabilities need to learn how to deal with failure, just like the rest of us…and part of making society truly inclusive is learning to deal with other peoples’ “quirks”, whether there’s a diagnosis attached to them or not.

Asking Tough Questions…

To be clear: I’m not denying that Asperger’s Syndrome and P.D.D.N.O.S. may present challenges that require support. The proposed changes to diagnostic criteria for autism for the DSM-V need to take into account that some vital supports, including respite, require a diagnosis, and researchers need to question whether their plan to use one set of criteria to diagnose all the autism spectrum disorders actually captures the full range of the spectrum. For our part, as parents, educators, advocates, and agency workers, we need to ask ourselves some questions before we start to panic about the implications of the new diagnostic criteria for autism:

  • How are our attitudes toward  and perceptions of autism and disability affecting our reactions to this news?  Is our thinking accurate in all areas?
  • Regardless of whether the new diagnostic criteria for autism goes through, how do we teach society to see the person before the diagnosis, and realize that there are people out there who (for a variety of reasons) have trouble in social situations?  Sometimes that’s just who people are…

I need to do some more reading on the proposed changes to diagnostic criteria for autism. I’d like to hear other peoples’ thoughts.  Click these links to learn more about the proposed changes and their potential implications:

http://www.psychologytoday.com/blog/child-development-central/201201/understanding-the-dsm-5-autism-criteria

http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=2&pagewanted=all

And more on “The Big Bang Theory”: http://www.cbs.com/shows/big_bang_theory/

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